Tuesday, April 18, 2017

Nursing professor who has multiple sclerosis teaches pediatric nursing.....and so much more!


Amy Boitnott


Kaylyn Christopher wrote the following about Amy Boitnott for UVA Today:

When class time is up, Boitnott, who keeps her balance steady by maintaining a sturdy grip on her podium, watches her students file out of the room. Then, she lowers herself onto her scooter and makes her way back to her office to tackle the next task of her day.

Eleven years ago, doctors diagnosed Boitnott with multiple sclerosis, a progressive disease that affects the central nervous system.  

“To teach a class is very taxing,” Boitnott said. “My body has to choose: I can either keep myself upright and balanced, or I can talk. It can be exhausting, so I use a scooter to get to and from class because I really can’t walk after I teach.”

“If I fall on the floor, they have to pick me up,” she said. “But it’s OK; we all need help in this world. It doesn’t mean I’m a weak person; I just have a weak body. I have a strong passion and a strong attitude about life, though, and I really hope my daughters and my students have seen that resiliency.”

Boitnott said she began to realize the magnitude of her impact when a student shared an honest confession with her about how she taught him to not pass judgment based on appearance.

“At first, that student thought ‘I got the disabled professor, the one who can’t walk,’” Boitnott said. “But now he knows he got the one who’s passionate about caring for kids. And that’s what I hope I’m remembered for.”

Read more about this inspirational nurse and educator at:
https://news.virginia.edu/content/balancing-act-pediatric-nursing-professor-manages-living-and-teaching-ms

Please share or leave a welcomed comment.

With thanks,

Donna

Friday, April 14, 2017

RIP Susan Jones: A congenital heart disease patient who beat the odds and became a cardiac nurse

Susan E. Jones, RN

Ed Blazina of the Pittsburgh Post-Gazette wrote an obituary for Susan Jones.

For Susan E. Jones, the best way to deal with a congenital heart defect was to become part of the medical community herself.

Mrs. Jones was born with only one ventricle, rather than two, in her heart, leaving her skin blue because her blood wasn’t receiving enough oxygen to carry throughout her body. She had heart surgery a day after her birth and her family was told she probably wouldn’t live very long.

But Mrs. Jones regularly defied the odds for someone with her condition and became a cardiac care nurse, working with the doctors who had cared for her at Children’s Hospital of Pittsburgh before entering health care administration with insurance providers.

She attended St. Margaret Hospital’s School of Nursing and worked as a nurse in New Jersey for two years before joining the staff at Children’s Hospital to be closer to her regular doctors.
Despite numerous surgeries — including an updated Fontan revision at age 36 — Mrs. Jones built a solid career at Children’s, eventually working to improve the record-keeping system for the cardiac unit. She later moved to Coventry Healthcare and Aetna, where she was a national project manager

Read more about Susan's remarkable journey at:

http://www.post-gazette.com/news/obituaries/2017/02/18/Obituary-Susan-E-Jones-Heart-patient-cardiac-nurse-who-defied-the-odds/stories/201702170095?pgpageversion=pgevoke

http://www.legacy.com/obituaries/triblive-tribune-review/obituary.aspx?pid=184125215


RIP Susan!

Donna

Tuesday, April 4, 2017

Anita Lesko, a nurse with Aspergers, invited to World Autism Day at the United Nations

Anita Lesko, RN, MS, CRNA
Toward Autonomy and Self-Determination-World Autism Awareness Day 2017

Anita Lesko has Asperger's syndrome. She is a nurse anesthetist, military aviation photojournalist, author, public speaker, advocate and founder of a non profit organization...and now invited speaker at the United Nations! 

The event was organized by the United Nations Department of Public Information and Department of Economic and Social Affairs, and co-sponsored by the Permanent Missions of Argentina, Armenia, Bangladesh, Bulgaria, Denmark, Ecuador, Israel, Italy, Kazakhstan and Poland.

We are so proud! Anita participated and gave voice to issues surrounding dating, marriage and parenthood for people with autism spectrum disorders.

Navigating Relationships: Dating, Marriage and Parenthood 
  • Moderator: Caren Zucker, Journalist and TV Producer, Co-author of “In a Different Key: The Story of Autism”
  • Dr. Julia Ejiogu, Founder and Director, Autism Care and Support Initiative, Nigeria
  • Hillary Freeman, Esq., Attorney, Freeman Law Offices
  • Anita Lesko, Certified Registered Nurse Anesthetist and Self-Advocate
  • Walter Suskind, Regional Spokesperson, Consumer Financial Protection Bureau, and Advocate for Sibling Engagement http://www.un.org/en/events/autismday/2017/events.shtml

  • The full proceedings can be view on the United Nations web tv*You can see Anita at marker 1:48:35 (wearing her signature hat).
http://webtv.un.org/search/toward-autonomy-and-self-determination-world-autism-awareness-day-2017/5380816054001?term=autism#full-text



Bravo Anita!!!!

With thanks,

Donna 

Sunday, March 19, 2017

Nurse amputee: Nobody told her not to try!


Mary Novotny Jeffries, RN, MS


At 11 years old, Mary Novotny Jeffries lost her leg to bone cancer. After discharge from the hospital she returned home to life with her 7 siblings; where nobody told her not to try. And, try is what she did!

She credits much of her success to her quick rebound to normal life. Between school and chores, she didn't have time to feel sorry for herself. 

In 1979, Mary launched the Families and Amputees in Motion support group while pursuing her master's degree in nursing at the University of Illinois at Chicago. Her focus was on rehabilitation nursing. At the UIC Amputee Clinic, she conducted research exploring questions regarding amputees' adjustment to limb loss, particularly in terms of body image. 

After presenting her findings, physicians and nurses soon began asking Novotny to talk to new amputees and present her information at other venues. These experiences helped to shape her passion for peer visitation. 

She founded the Amputee Coalition of America in 1986 (amputee-coalition.org) and the National Limb Loss Information Center in 1997. 

Now, she counsels and trains amputees in locales as close as Chicago and as far away as Haiti, where she traveled after the devastating earthquake of 2010.

Mary considers herself a "lucky" cancer patient. 

"I rarely felt like what I did was work.... Giving to help others is not work. It rewards the giver far more than one can imagine."

Click on the articles below to read more about Mary's remarkable journey.


Cheers!

Donna

Monday, March 13, 2017

Exceptional Nurse celebrates Anne Bourque RN, a colon cancer survivor!



March is colorectal cancer awareness month. 
Exceptional Nurse celebrates, Anne Bourque RN, a colon cancer survivor!

In 2014, Anne wrote:

I am a registered nurse and started working at City of Hope in 1980 when I was 25. I can honestly say accepting a job here was one of the best decisions that I have made in my life. I have worked with some of the most talented and remarkable colleagues, and knowing many of them for 30-plus years has enriched my life tremendously.

Fast forward to 2002: Then, as now, I was the clinical nursing director of hematology and hematopoietic stem cell transplantation. I was divorced, with two children  – Elizabeth, who was 19, and Gregory, who was 14.

I was 47, had some bleeding and went for a colonoscopy at a different hospital. I had no desire to have any City of Hope physician see me with less than my normal work clothes on, so naturally, I would have the test done elsewhere.

On Feb. 13, on the colonoscopy table, I found out that I had colon cancer.

Wednesday, March 1, 2017

No mud no lotus: True for nurses with disabilities?



"Thich Nhat Hanh, the Vietnames Zen Buddhist spiritual leader, has said, "No mud, no lotus." Without suffering through the mud, you cannot find the happiness of the lotus. Without grit, there is no pearl. He also believes that when we know how to suffer, we suffer less."

"Thich Nhat Hanh acknowledges that because suffering can feel so bad, we try to run away from it or cover it up by consuming. But unless we’re able to face our suffering, we can’t be present and available to life, and happiness will continue to elude us. Nhat Hanh shares how the practices of stopping, mindful breathing, and deep concentration can generate the energy of mindfulness within our daily lives."


Mucking around in the mud may be an essential part of the journey for many nurses and nursing students with disabilities. Do you agree?

Please share your thoughts,

Donna

https://www.amazon.com/No-Mud-Lotus-Transforming-Suffering/dp/1937006859/ref=sr_1_1?s=books&ie=UTF8&qid=1485022824&sr=1-1&keywords=no+mud+no+lotus

Wednesday, February 22, 2017

Research project to address adults with autism: Nurse with autism on the research team!

Dr. Teal Benevides
On February 2, 2017, Danielle Harris, Senior Media Relations Coordinator at Augusta University announced the news of an exciting research project.

Research to address the needs of autistic adults remains relatively unchartered territory, but Augusta University Occupational Therapist Teal Benevides hopes to shed light on this population’s critical needs in her latest project “Priority Setting to Improve Health Outcomes: Autistic Adults and Other Stakeholders Engage Together.”

The prevalence of autism spectrum disorders has increased exponentially in the past decade. Although extensive resources are provided to support children with autism, adults with autism are at increased risk for a variety of chronic health conditions,” Benevides said. “Little is being done to address the health needs that are important to this group and our team and I are working hard to change that.”

For this project, Benevides will be working with a team of critically-acclaimed partners such as Autism Speaks board member and Adelphi University professor of special education Dr. Stephen Shore and Global Autism Consulting Organization founder Anita Lesko, a Columbia University graduate and certified registered nurse anesthetist. In addition to being scholars, Shore and Lesko bring a special perspective to the project as they both are adults with autism.


Anita Lesko, CRNA

Read more about this exciting project at:
http://jagwire.augusta.edu/archives/40792



Donna

Monday, February 13, 2017

Permanent Hearing Loss as a Mom and Nurse: What do I do about…..??




      
       My name is Sarah and I am now 41 years old. I lost a large percentage of my hearing about 3 years ago, suddenly, with no definitive reason.  wear bilateral hearing aids and have severe tinnitus that keeps me from ever having a moment of quiet...EVER.  That in itself is enough to make you feel like you are losing your mind. Constant high pitched, loud ringing. 

      It takes so much brainpower and patience to filter through what I think I hear, the context, read lips and compile a thought that seems to make sense. I get it wrong A LOT even with the hearing aids in. I laugh at myself most of the time, like the time my husband and I were at an outdoor orchestra concert.  He asked me if the piece was from Mozart.  I was shocked and offended and answered a stern, “NO, I ABSOLUTELY DID NOT FART!” (We do not even use that word; we are fancy, high-class people who say, “toot”)! There are plenty of funny times like that but I want to speak a bit to the not so funny times.

           I am a registered nurse. I took a few years away from my career to have three beautiful, most-of-the-time charming and delightful children.   It was always in our life “plan” (ha-ha) that I would go back to work.  After the birth of our youngest son, my hearing took a sudden decline.  I went to the ENT with the thought that I had ear infections or maybe needed tubes. Nothing of the sort…..failed hearing tests, maybe otosclerosis, and sent to a surgeon for possible stapes transplants. 

      As I meet with the specialist, my calendar in hand ready to schedule my surgery, I was told, “Sorry to tell you this but you have significant nerve damage, need bilateral hearing aides, loss is progressive and irreversible and you are not a surgical candidate”.  I held back the tears of shock while I attempted to ask some questions.  

      But, what do I do about my kids?  They are still so young.  My husband is a doctor; he works a lot including night shifts.  How will I keep my kids safe crossing the road if I do not hear the cars or hear them cry out at night (cannot wear hearing aides while you sleep) or struggling in the pool?  I do not hear the doors in my house open even with a door alarm, much less hear someone trying to come in and hurt or steal from us. 

      I have worried and prayed… please maintain enough hearing until my kids are not as dependent on me for their safety.   I have been able to get by on learning the feeling and sounds of each child’s footsteps, reading lips, strengthening other senses, and depending on the other members in our house to hear and translate for me. And, no more night shifts for hubby! 

     And what do I do about my nursing career? have practiced nursing in many areas, but my true love and heart goes into Cardiac Intensive Care and Hospice nursing. In one area, you do all you can to “save” your patient and in the other you do everything you can to ease their passing.  What is similar is the opportunity to intimately know your patients and their family; their story, both medically and personally, their habits, likes, dislikes, the special way their heart beats, the way they inhale, handle pain, medicines, or the change in their vital signs during a bed bath. 

     I cannot hear my patient’s lung or heart sounds, call bells or questions anymore.  Amplified stethoscopes are helpful but I have such loud tinnitus, that I cannot hear over the noise. How would I manage in an emergency? How could I remove hearing aids to listen with the stethoscope, and then replace the hearing aids to hear questions and orders? I could use an electronic stethoscope, but I personally do not feel safe as a cardiac ICU nurse without my own “ears”.  I was/ am afraid of missing something with patients who are so fragile. I realized that I would not feel comfortable or as competent at the bedside as I had before.

      I heard many "reassuring" comments.  You are lucky your husband is a doctor and you do not need to work, many people have it worse, your career should not define you, etc.  Here is the thing; I went into nursing because it DOES define me.  I am a caregiver, a nurturer. I am smart, witty, and work well to comfort others.  I can think fast in an emergency, see concern on people's faces, and translate for patients and families the physician speak. I AM A NURSE in my heart and soul.  So what do I do about…???….I grieve, get mad and frustrated, bargain, beg, pray and cry a lot.

    Then, I put on my big girl panties and went back to school for medical documentation, billing and coding.  I took and passed my CCS exam; I opened myself to finding another passion. 

      Writing fell into my lap and I love it!  I will never do or hear many things again, but I am grateful for what I have.  There is so much more to who I am now because of all of the “what abouts…?”.  

I am a nurse and the good I do in the world stems from that part of my heart.


       This is my story.  It by no means indicates that nurses cannot practice bedside care and do it well with hearing loss. The newest technology and hearing assistance devices can bridge the hearing loss gap to providing care.   Trained in cardiac critical care, I see and treat every patient with that degree of intensity.  I felt like I could not provide that level of care to my patients. My fear of missing something life altering is too great so I sadly chose to leave that nursing career path.


Sarah Matacale RN, BSN, CCS can be reached at sarah.matacale@gmail.com 

Sunday, February 12, 2017

Clear surgical/face mask arrives!



The Association of Medical Professionals with Hearing Losses announced the long awaited arrival of clear surgical masks.

Read the full announcement and details athttps://amphl.org/fda-approved-clear-surgical-masks-now-available/

Cheers!

Donna

Wednesday, February 8, 2017

Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS)

Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "my rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." 





February 7, 2017


               Thank you for the opportunity to share my artwork. I hope you will take a moment to read what this painting represents and what it means to me.      

I based this painting on the Bible verse Matthew 6:26, that says “Look at the bird of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” This verse means a lot to me, because it reminds me to fully trust in God. Living with CRPS (Complex Regional Pain Syndrome), it is easy to feel anxious about the future.  This verse reminds me that the Lord cares for me, knows my every need, and will provide.
              
               The trees represent each season of the year: spring, summer, fall, and winter. They also represent the seasons of life. This symbolizes that no matter what season we are going through in life, whether good times or hard times, it reminds us that the Lord is always with us in every season life brings.

               The birds in the painting are a representation of the birds mentioned in Matthew 6:26. However, notice that all of the birds are the same color except for one. One bird is orange, while the rest are black.  The orange bird represents a person with CRPS. This signifies how CRPS is an invisible illness, and how patients like me often blend in with everyone else even though we are different.  Even though you cannot see our pain, we try our best every day to fly right along next to the other birds.     


        Thank you,

                                                                                Alyssa Skillman


Alyssa Skillman can be reached at: alyssaskillman@gmail.com

Monday, January 23, 2017

Army nurse set on fire by colleague wants to resume career




In September 2016, First Lieutenant Katie Ann Blanchard, a nurse in the Army serving at Ft. Leavenworth in Kansas, was set on fire and attacked by a colleague. Almost 20 percent of her body was severely burned, including her entire face and ears, and parts of her arm and chest. 

The army sent her to San Antonio to be treated at SAMMC's burn victim unit where she's had countless surgeries and been heavily medicated. She's also been meeting with behavioral health physicians who have been helping her with the PTSD she has experienced since the attack

Blanchard hopes to continue her career in nursing after she recovers more and has been inspired by the nurses she’s met at SAMMC to work with burn victims one day. 


Katie Ann, we salute you!

 Please let us know how we can help you in your recovery and return

 to nursing practice.

We wish you all the best,

Donna Maheady
President of www.ExceptionalNurse.com


http://www.kvue.com/news/health/army-nurse-set-on-fire-by-colleague-speaks-out-about-her-recoverys/389711041

http://www.nydailynews.com/news/crime/kansas-hospital-worker-sets-boss-fire-cuts-scissors-article-1.2788388

https://www.facebook.com/smilesforkatieann/?fref=ts


Sunday, January 15, 2017

Martin Luther King Day: How social justice led to disability justice for nurses with disabilities



The work of Dr. Martin Luther King has lived on and impacted so many-- including nurses with disabilities. The civil rights movement led the way to passage of Section 504 of the Rehabilitation Act in 1977 and the Americans with Disabilities Act in 1990.

Alice Wong penned the following message In a blog post originally published on January 16, 2014 for BK Nation“Disability Justice and Social Justice: Entwined Histories and Futures”. Alice Wong is the Project Coordinator of the Disability Visibility Project:


“Just as Dr. King and the many activists involved in the civil rights movement were influenced by Gandhi and Thoreau’s use of civil obedience, leaders of the disability- rights movement witnessed first-hand the power of non-violence in the 1950s and 1960s.

Similarities exist among the Montgomery bus boycott, the Birmingham campaign in 1963, and actions taken by disabled activists in the 1970s. Section 504 of The Rehabilitation Act prohibits discrimination against people with disabilities from participating in any program or activity receiving federal funds based on incapacity.

Secretary of Health, Education, and Welfare Joseph Califano refused to sign regulations related to Section 504. On April 5, 1977, non-violent protests and demonstrations began nationwide. A group of disabled activists began a sit-in at the San Francisco offices of HEW, the longest such demonstration ever undertaken. Kitty Cone, one of the demonstrators at the 504 sit-in, recalls:

“At every moment, we felt ourselves the descendants of the civil rights movement of the ’60s. We learned about sit-ins from the civil rights movement, we sang freedom songs to keep up morale, and consciously show the connection between the two movements. We always drew the parallels. About public transportation we said we can’t even get on the back of the bus.”

On April 28, 1977, Califano signed the regulations and the historic protest ended. Section 504 codified civil rights for people with disabilities and the notion that people with disabilities are a distinct minority group and protected those individuals from discrimination.”

The disability rights movement continued to seek justice in the courts and in the halls of Congress. The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990.

The spirit and letter of the law continues to be challenged as more and more people with disabilities push the door open in a variety of professions. The nursing profession is one example. Nurses with vision and hearing loss, mental and chronic illness, spinal cord injuries and other disabling conditions continue to face discrimination and struggle to obtain access to educational programs and employment opportunities. Much has been accomplished...but much remains to be done.

Today, we remember and give thanks for the work of Dr. Martin Luther King, Jr. 

“Injustice anywhere is a threat to justice everywhere.” 
(Dr. Martin Luther King, Jr.)


Saturday, January 14, 2017

For nursing students with learning disabilities: Is speed associated with ability?



Jamie Axelrod, AHEAD President and Nicole Ofiesh, Ph.D., Learning and Education Specialist, Lecturer, Stanford University wrote a letter to the Chronicle of Higher Education in response to an article by Ari Trachtenberg titled Extra Time on an Exam: Suitable Accommodation or Legalized Cheating? (http://www.chronicle.com/article/Extra-Time-on-an-Exam-/237787

The letter to the Editor included the following:

....The first incorrect assertion is that there is no research evidence connecting accommodation to disability. In fact, there is a substantial base of research dating back to the 1980’s.... There continue to be researchers contributing to this area today including Educational Testing Services, College Board, National Center for Educational Outcomes.... What we know is that the largest population of students with disabilities in post-secondary settings are students with cognitive impairments such as Specific Learning Disabilities, Attention Deficit/Hyperactivity disorder and various Mental Health conditions. What all of these conditions have in common, other than being covered by the Americans with Disabilities Act, is that they are associated with functional limitations which require more time be provided to best ensure the student has an opportunity to demonstrate what they have learned in an academic setting.... 

What is often misunderstood is that the various disabilities whose impacts require more time are not all the same nor is more time provided for the same reason. For example, a student with a reading disorder such as dyslexia may need more time to actually read sentences and process the questions and answers being presented on the exam. A student with AD/HD (of which there are three subtypes) may need more time to focus and attend to the task at hand, read and reread information to ensure that they comprehend the questions being asked, and attend to the visual details in sentences and problem sets..... These individuals may need more time to hold and manipulate a test item or question in their mind and retrieve the appropriate answer, a facet of cognition known as working memory..... 


The second issue raised in the article seems to be an assumption that all exams need to include speed as a test construct. This appears to arise from a belief that speed is associated with ability. However, similar to other research in the field, Horn and Blankenship (2012) report that in homogeneous samples of young adults “…measures in which there is much emphasis on speediness correlate near zero, perhaps negatively, with tests that require solving difficult problems.”(p.91)..... While it is true that assessments designed to measure proficiency on some types of tasks, such as responding with particular actions in a medical emergency, may require time as an element, most academic exams do not fall in this category..... 


Prof. Trachtenberg’s assumptions that students without disabilities might be disadvantaged by the provision of time accommodations given to students with disabilities is also contradicted... Published research..... in this area reveal that, in general, students without disabilities tend to see no statistically significant benefit if they are provided more time than what is typically allotted to complete scientifically validated, standardized exams... 


Prof. Trachtenberg’s call for specific accommodations for specific disabilities.... assumes that human cognition can be quantified in the same terms as an engineering or mathematical solution. Moreover, his suggestion places the responsibility, and to some degree blame, squarely on the person with the disability......


The final, and the most unfortunate, assertion is that “time extensions re-victimize some of (his) students”. ... Victims of what? The A.D.A. recognizes... that disability is a natural and normal part of the human experience and not an affliction which victimizes otherwise “normal” individuals....


 Students with disabilities are well aware that what accommodations provide is a level playing field upon which they can demonstrate that they have achieved the level of mastery in their academic coursework which rises to the standards of the institutions they attend. In the end, this does not diminish their achievements but in fact highlights their abilities, which is all that that they are asking for and justly deserve.



The complete letter to the editor can be read at:
https://www.ahead.org/hub/04-November2016/Chronicle

Please feel free to share your thoughts about speed and testing accommodations for students with learning disabilities in nursing education and clinical practice settings. 

With thanks!
Donna